‘Brain On Fire’ – True Story Made Into Netflix Movie

It’s not ironic that after being diagnosed with a congenital defect like Chiari Malformation my fascination with the brain and neurology overall has flourished. There aren’t many opportunities where I can watch the morning news without quickly being pushed to switch the channel to more important things like Elmo and Peppa Pig – my kids favorites.

However this week, this particular morning was different, I was able to watch Megan Kelly on Today interview Susannah Cahalan and Dr. Souhel Najjar – to say that this interview and as I watched the movie was both shocking and captivating is an understatement. I was so eager to know more about her story that I already watched the movie, I’m not one to do that, as I’d prefer to read the book first. If I can throw some names out there to capture more of your interest in this Netflix original, Chloë Grace Moretz plays Susannah Cahalan, Carrie-Ann Moss plays her mother, Jenny Slate her friend and co-worker and Tyler Perry plays Richard, her boss at the New York Post. Susannah Cahalan captures in her book ‘Brain on Fire’ in what she calls, her ‘month of madness.’ Without giving too much away so you can grab this New York Times bestselling book and/or watch the movie on Netflix, I’ll try to be brief on Susannah Cahalan’s journey after going misdiagnosed. She retells the events that took place prior to her diagnosis made by Dr. Souhel Najjarof of an auto-immune disease called Anti-NMDA receptor encephalitis, this is an acute form of brain inflammation that is potentially lethal but has a high probability of recovery with treatment. Although there’s a range of  neuro-psychiatric symptoms some may include;

  • cognitive impairment
  • memory difficulties
  • seizures
  • involuntary movements
  • slowed or loss of ability to speak
  • behavioral changes such as agitation
  • loss of inhibition
  • hallucinations (visual or auditory)
  • paranoid thoughts
  • severe anxiety
  • sleep disruption including severe insomnia
  • decreased level of consciousness – to the point of unresponsiveness, catatonia or coma
  • weakness or numbness of part of the body
  • loss of balance
  • vision changes

Dr. Souhel Najjar was able to diagnose Susannah Cahalan using a test that involved her drawing a clock, this is a test that is normally given to people that are thought of having dementia or Alzheimer’s disease. Susannah rather than drawing the clock’s face with the numbers going from numbers 1 through 12 going around. The disease caused her to draw all of the numbers 1 through 12 only on the right face of the clock. This happened because the right side of her brain, which regulates the left side of the body, was inflamed. Dr. Souhel Najjar helped her from being placed in a psychiatric ward because she was already thought to be losing her mind, to being bipolar and to having schizophrenia, to name a few. This doctors determination to finding Susannah again, helped her on her road to recovery and rebuild her career as an up-and-coming journalist at the New York Post.


Book Available On Amazon – Brain on Fire: My Month of Madness

As someone who went misdiagnosed for years with Chiari Malformation and Syringomyelia , even after multiple testings, blood work, MRI’s and spinal taps, and still continuing to be misdiagnosed, this movie struck a cord. Chiari Malformation is found in only 1 in every 1,000 people and even after decompression, I am still living with symptoms, including memory difficulties, insomnia, weakness and numbness in the body, loss of balance to name a few. As Dr. Souhel Najjar states, only 10 percent of people with the disease found in Susannah Cahalan were properly diagnosed at that time. However, a better understanding of the disease and its symptoms has resulted in more frequent diagnosis and treatment today. This is such an inspiring journey of one woman’s long road to rebuilding her life after being misdiagnosed.

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You Have More Than You Know

You Have More Than You Know

Often times it’s easier to dwell and think of all the negatives that are in our lives. I think of my health, of the downward spiral it’s on and it’s so easy to get down, get sad and be a pessimist. The positives isn’t near in sight. But there are positives, to everything, to it all. I’ve often times think of the positives that Chiari and Syringomyelia has brought to my life. It’s allowed me to stay grounded and to live in the moment. I always thought of hospital stays as something foreign. However, having been in the hospital for weeks on end recovering from surgeries brought on by Chiari, it’s given me a whole new outlook on hospitals. There are so many people there, recovering, learning to walk, learning to dress – I was in that position at one point in my life, learning it all – all over again, from learning to walk, to going up and down stairs to learning to move my head from side to side to learning how to dress myself – I was about 28 years old at that time with three littles at home. So many people there feeling lonely, scared, hopeless, frustrated and sad. I’m so thankful to have seen that. It allowed me to see that even though I’m going through something very much valid, there’s also always someone else going through it worse than I am. There are people needing so much more than I do, having a grateful heart for what I have and changing perspective allows me to see what’s right in front of me. Only then is when I realize that I have so much more than I know.

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While doing a summer assignment with my oldest son, something stayed with me, it’s from a Swedish folktale titled, “The Laughing Magpie.” The two lines are …

“I laugh because you would rather be sad than fix your own problem.”

Know that you are bigger than any obstacle and any struggle you may be facing today.

“Silly boy, don’t you see that everything you need is right before your eyes?”

If we stop and open our eyes, we can gather the resilience and the inner strength that lies within.

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Photo: Joseph Barrientos

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Surgery – Faith Over Fear

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Surgery he said. Another surgery – I need a minute.

The preparing, the mental preparation, the anticipation and the recovery. One can never be used to surgery – I can never get used to surgery, one can never feel at ease knowing they’ll be seeing yet another surgeon or specialist, one can never be used to going into that doctors office and explain what’s wrong. You can definitely can never get used to being seen, most of the time half naked, being written on, poked on, needles ready and all eyes focused on you. They’re ready to see you break down, they’re ready to comfort you and they want to see your reaction. One can never be ready to be told, “it’s time” and have a team of unknown medical professionals wheel you in the operating room. The operating room, such a cold place – why’s it so cold, so unwelcoming, full of devices, beeping sounds all around, people with masks trying to make you feel comfortable, but how?! How do you feel comfortable, it’s cold and it’s the unknown – all over again. It’s happening all over again.

The surgeon called me last week and said, “results came in, good news, it’s benign, but it needs to be removed, when’s surgery good for you?” Once again, I felt alone, cold and afraid of the unknown, but why, I’ve been down this road countless times – too many to count. Either that or I’m just embarrassed to write the number down. In my short years, I’ve met my share of doctors, surgeons, nurses, hospital rooms and operating rooms. I’ve felt my share of needles, had my blood drawn plenty of times but am still uncomfortable. The hospitals make me feel uncomfortable, but it’s during these times when you leave it all in His hands and allow it all to be left up to the doctors. No matter how many times I’ve been down this road, I can never get used it.

Faith over fear knowing that my heart and soul will be at peace knowing that this is my journey. My journey, my story to. There’s no one stronger than you, no one with unique health circumstances.

This makes you special – I am special because I am 1 in 1,000 due to Chiari and it reminds me to slow down and live at the moment.

Have a wonderful night.

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Accepting + Dressing Body After Baby

Accepting + Dressing Body After Baby

The most beautiful experience in a woman’s life can quickly get overshadowed after the birth of her baby. As a first time mom and full of energy at that time, I quickly lost all the ‘baby’ weight and was back to my ‘ol self in no time. I walked to a local park with baby strapped securely in her stroller and walked about a mile a day. There was no science, no diet, no torture, no miracles here to be made. I simply walked every day – Monday through Friday. At this point in my life with Chiari + Syringomyelia and Hypothyroidism – which can give you unexplained weight gain, exercising is basically non-existent, much less walking for long periods of time because my legs can give out at any given time.

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At this point my body after having six c-sections  – understandably, has not been the same. Yes I know there are six which is a lot according to today’s society – but I won’t be going into all that. The message here is to accept our bodies as they are after baby. Your body has done the most precious thing, which is to create and care for a human in your womb and then give birth to it. I’ve birthed my babies being born weighing from 5 pounds to 9 pounds 10 ounces. I’ve also been the size 2 and am now way past that! But before I allow myself to tear my body down, I try to remember that my body has done what no other body has. It’s been through surgery after surgery and has carried babies – healthy babies! Remember that! Also, give your body time to get back to pre-baby shape, don’t rush the process, it took you 9 months to get there, it’ll take you 9 months to get back there.

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Now, how to come to a place where you are accepting of it?! How?! When I look in the mirror, I want to love what is looking back at me. It may not be perfect, I have loose skin, I have cellulite and dimples in places where I didn’t know there could be and stretch marks on my stomach, and legs and well everywhere! The darn things are everywhere, they’ve invaded my body, have taken out their sh$t and are enjoying their stay. There is no leaving for them any time soon. The creams, the oils, they don’t work – at least not for me they didn’t. Either that or I’m months too late in getting my money back on those belly creams. I think they’re actually hereditary, if your mom had them when she was pregnant, the chances of you having them are pretty precise. Sorry to be the bearer of the bad news, but yes!

The most effective way I’ve found aside from making the necessary steps in accepting my body the way it is now, is to dress for my body. You need to know your body, know your new body shape and dress for it. And know that a woman with confidence makes her the most beautiful. Lastly, wear a shape wear after baby, it helps smooth and tuck the abdomen area. These looks are what I look for when shopping and dressing my new body after baby.

It’s not what you wear, it’s how you wear it.

I’ve found that non-tight fitting t-shirts or flowy shirts look best. They don’t accentuate my stomach or abdomen area – my ‘problem areas’ and are the most flattering. And if I do wear a form fitting shirt, I like to wear a jean jacket over, jackets are such staple pieces.
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Also, high waisted jeans, they avoid the ‘muffin top’ – which by the way, there isn’t such thing, that only means you’re wearing jeans that are two sizes too small for you. What a difference good fitting jeans make! Also, if I can give you a tip on something to look for when buying jeans, the zipper, the longer the zipper the less camel toe you’ll get. Yes!
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I love the A-line t-shirt dress for a casual look. It’s so flattering and hides what you don’t appreciate at the moment. I personally don’t like anything that is tightly cinched at the waist line or underneath the boobs – you know what I mean, yes, I feel like it makes me look a little pregnant-ish again.

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Just like the A-line t-shirt dress, I do the same for the evening dresses. How amazing are these?!

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And lastly the skirts, now because my ‘problem area’ is my abdomen, I pull the skirt up higher than my waist, bring the skirt up higher – you’ll notice the difference! You can see what I did for our last family photo session with the skirt and chambray shirt – such an easy and cute way of finding what you currently have while embracing your new figure. I’ve loved the combination of a casual top, like a tank top to a t-shirt with a flowy skirt/dressy bottom.

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And because my family will be going on vacation in the next couple of months, I wanted to see the swimsuits. These I found on RoseGalRose Wholesale and Plus Trendy – love the ruffle tops!

‘Wanting to be someone else, is a waste of the person you are today’

Here’s to us women loving our bodies at all stages of life! Have a beautiful day.

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Photo: Tanja Heffner

Food For Thought: Calm a fearful heart

Food For Thought: Calm a fearful heart

‘Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.’Philippians 4:6

‘Be still, and know that I am God.’Psalm 46:10

As a mother, I often feel rushed, as if I don’t have time, time to gather my thoughts, time for myself, time to be still or time to take a deep breathe. It’s the endless things to do, the never ending things to clean, to sort, to fold, etc. The stress then triggers anxiety and it all feels as if I can’t breathe and time continues to move forward.

Aside from my Chiari + Syringomyelia I also have Hypothyroidism. I’ve been taking medication for the Hypothyroidism for a number of years, maybe 10 plus years. However, for the past couple of years it’s become an area of concern – this year having the symptoms worsening. I had decided to tackle my Syringomyelia first before taking on another health challenge – one thing at a time.

I’ve been a ‘responsible’ adult and made my list of things that need to be done to get to the ‘bottom’ of all this. I’ve seen a second opinion with a well known Endocrinologist – check, had my blood tested for him – check, had an ultrasound of my throat – check and finally Wednesday, saw the throat specialist or ENT, also known as the Otolaryngologist – check. As you know with the mountain of paper work that needs to get filled out when it’s the first visit, I listed my medications, surgeries, symptoms, etc. There he noticed one of my symptoms was vertigo and recommend I see a colleague of his to check my ears – sometimes an unknown issue with the ears can cause vertigo and imbalance. I’ve had my ears check before and nothing was found, but I’ll get them checked again – it doesn’t hurt to get a second opinion.

So, the outcome of my visit today with the ENT, I need to get a CT Scan done of my throat because lo and behold, a CT Scan gives better results than an ultrasound! After that, a biopsy, my ultrasound shows thyroid nodules that need to get tested, more than anything he wants to confirm it’s not cancerous either. And then from there he’ll determine and we’ll collectively decide if surgery is an option and or necessary.

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Yet, with all of this my heart is still, calm and at peace. May I be numb to surgeries, numb to never ending health issues that arise, so used to taking medication that have been tested to help me feel any sense of ‘normalcy’? Or am I just naive? I’m not sure, maybe it’s a mix of it all.

I do however know that there’s someone ahead of it all, someone who helps me not fear, not worry so much, not feel useless or hopeless, someone who gives me hope and is the one to calm my heart and is my rock as I sit in the doctors office as he reads me the results. He calms my anxiety and helps me stand to face yet another health concern and potential surgery. It is He who gets me through it all, and it is He who doesn’t leave my side.

Today I think of all those whom received unpleasant news yesterday or today, either it’s yourself or someone close to you, I think of you. Please know, you’re not alone, do not fear and know that there is hope during this time.

He is with you helping you be still. And it is He who reminds you that He is God.

Blessing to all.

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Photo: Luke Palmer

Love, Life + Chiari

Love, Life + Chiari

It’s a bit ironic that I keep coming up on articles about love and heartache. This topic is particularly complex for me because love is a topic that – in my opinion, many have different views on. I live with Chiari + Syringomyelia which like any condition can be lonely. This is why many may experience a bit of depression and anxiety. This all can get in the way of maybe allowing others into your personal space and by this, I mean everyone, children, spouse, you name it, preventing you from loving. So, how do you love, when you are trying to love yourself and accepting the new you? I don’t know your answer to that. It’s no secret that I’m still trying to accept my own personal struggles with the 2013 diagnosis, so much so that I decided to seek help. If you’ve read my Chiari + Mental Illness you’ll know that the help came in form of my therapist.

Since my diagnosis I’ve felt that I’ve wanted to go back in time, thinking that maybe things would be different. That’s such a lie, isn’t it? Because the Chiari diagnosis would have come regardless of where my life would have gone, if not where I am now, it would have still been the same. I have my highs and lows, I suppose like anyone living with a health condition and chronic pain, and trying to come to terms with it. I say that while wanting to believe I’ve accepted the diagnosis. Like it’s OK! Or is it?! But, why do I want to go back in time? Maybe because I haven’t fully accepted my condition, to really say, I have Chiari?! Ugh. Those dreaded words. It’s at times overwhelming – exhausting!

And just like the feeling you get from the loss of a love due to a break up and heartbreak, I’ve felt that feeling of wanting to come up for air. I’m gasping for air and I’m trying so hard to stay above waters. I’m definitely treating Chiari like a long lost love, the only difference is that, I’d rather live without it. All this reading on love and heartache has brought back some memories of when I was younger and in love, carefree, in love with life, in love with my plans for the future – Chiari wasn’t there. I went through such a bad heartbreak at a young age and feel it’s all molded me in who I am today – maybe not a person I’d want to be, but it did change me. I was and continue to be a work in progress because of the emotional damage. My husband has had to help me unpack all this baggage that I’ve carried with me – willing to or not, he’s had to deal with it. A love, past or present has a way of marking your life, to touch it, to influence it. I read somewhere, “Love is Pain.” It is, so if you’re willing to love, you’re also willing to go through the pain it can possibly cause. And if there’s a breakup – and you loved them, you continue to love that person because of whom they were with you. However, as time goes by that person is no longer the same, because time has gone by and they’re not the same person you knew. Or are they? How do you let go? I don’t think you do, I think time heals a broken heart but I think that person will forever remain in your life, in form of a memory – in the memories you both shared. A connection you build with someone you fall in love with is incredibly strong, and you can say it isn’t so, but believe that there is someone out there that you will connect with in such a deeper level that they will change the course of your life. Love – true love, is something that not many experience in their lifetime. If you lose it or still have it, it’s something that not many get to experience in their lives. And if you haven’t, have hope that one day you will.

And when you do, when you find true love, you will experience one of the greatest joys life has to offer. And that is what life’s all about!

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Photo: John Jennings

Chiari 1 Malformation and Mental Illness

Chiari 1 Malformation and Mental Illness

While many of doctors that claim to have experience in Arnold Chiari Malformation would still say, Chiari is more “in your head” than anything else or “Chiari doesn’t cause symptoms” –  no further treatments need to be done, I disagree. I still like to describe Chiari as an invisible illness because I look so normal to the person in front of me but even as it goes unseen, it doesn’t mean that the symptoms and pain are psychological. If your current doctor continues to tell you that, “you are OK,” do not hesitate in seeking a second opinion and starting from scratch, find a doctor that does have experience with ACM. I got a second, third and a forth until finally in my search for new doctors, it led me to a great neurosurgeon in my area. Although, I haven’t found any research linking Arnold Chiari Malformation and mental illness, my experience with the disorder has led me to believe that self advocacy and self care is essential. The need to mentally help yourself, is important. I realize that even after having had two surgeries due to Chiari 1 Malformation and Syringomyelia, the mental challenges that come after going through such a traumatic experience is one worth talking about.

Can you remember the day when men dressed in white coats – surgeons, came to your hospital bed side to inform you of your test results, followed by the procedures that you will soon have to endure? Because even after having Chiari decompression and Syringomyelia laminectomy, know that none of these surgeries are a cure, these surgeries are needed just to prevent permanent nerve damage. Also, these surgeries are not a guarantee that they will help alleviate any of the current symptoms. So, whether mental illness has a place in your life, in form of depression, anxiety, social anxiety, baby blues, postpartum depression, autism, post traumatic stress disorder, eating disorder, substance abuse disorder, please know that you are not alone. Also, I encourage you to find your voice and find the courage to get help, professional help. Because like many things, mental illness has no one face, it does not discriminate and it can happen to anyone.

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So, if we’re going to go down this honesty path and I remain true to myself, besides you knowing these tidbits about me, know that aside from being a brain surgery survivor, I have been dealing with depression, social anxiety and agoraphobia since my decompression surgery. Which according to the Webster’s dictionary, agoraphobia is a fear of open spaces, making it difficult for the person to leave their house. Please do not assume that I am cooped up in my home. It just means that it takes me a lot longer to mentally prepare myself to get out of my home and do things the “ordinary” person does so naturally. They include things like attend doctors appointments or go for a quick trip to the store. It can take days to mentally prepare myself to leave my house for a doctors appointment – at times at the end even canceling. These tasks are challenging for me, perhaps you are dealing with a different mental illness.

If you’re asking and wondering how I found all this out. Well, the turning point for me came in form of  a routine neurological visit that led my doctor to suggest I see a psychologist. Of course coming from a family where psychologists were ever mentioned, I immediately got defensive and declined. When the doctor – bless his heart, asked why, I quickly became defensive and said, I am not crazy. He then replied, “I am not crazy either and I see one, because after a 20 year marriage that came to an end, seeing a psychologist was a way I was able to cope.” This made me feel one, not crazy and two, open to the idea of seeing a psychologist. And as 2017, am now seeing a psychologist and psychiatrist, both of which work hand in hand to get me from feeling ill to feeling well. This is something hard to admit because society has placed a negative stigma towards psychology and mental health. It’s something that isn’t spoken about, it’s frowned upon and shamed. The last time I read on someone advocating on mental health was coming upon an article from singer, Demi Lovato. I think being silent on metal illness is so much worse than the topic itself. People build things up inside because they’re afraid, afraid of being embarrassed, humiliated, misunderstood or feeling the wrath that it would potentially bring. I want to embrace not only my new body that has produced six babies to which I proudly wear six scars. But also the scars left behind by Chiari. However, learning how to embrace and accept my new life after my Chiari 1 Malformation diagnosis has been challenging but also life changing. Chiari isn’t for the faint of heart. As part of my Chiari journey I want to feel free to find my voice and speak on how I work daily on my mental wellness. If you’re working on yours, never give up and if you haven’t started, know it’s never too late to start. I’m convinced this disorder is part of my life but definitely not who I am. Let me be the first to acknowledge that God continues to play a huge part in my journey to recovery – maybe not in the most ideal way because I am so flawed! My religion and spiritual beliefs have helped me in my recovery – I am Catholic. Spirituality helps in recovering from things like stress to mental illness. However, I do also believe that aside from my religion, medical help in the form of professional counseling and medicines also help. Mental illness is by no means anything to be ashamed of, seeking help in knowing how to manage it in the best way possible is important for your well being. The main goal is to lead a peaceful, meaningful life and to continue on the road to recovery, that is both spiritual and mental.

Also, know that it’s OK, it’ll all be OK, do not compare yourself to others, to other moms, dads, friends or co-workers, because to others we are either too much or not enough. And that’s OK too.

Happy day friends.

-Ana

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Photo: Pablo Gentile